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Resources

 

Additional Resources

 

The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Click the following links to visit specific pages within NHF’s website:

The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.  Their vision is that the bleeding disorders community will remove all barriers to both choice of treatment and quality of life.

Apply for the 2022 LSBDF/HFA Symposium Scholarship here.

 

World Federation of Hemophilia: An international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. They have developed a collection of Toolkits for many stages of life. Download informational pages and tools that you can share with teachers, ER staff, and more.

Committee of Ten Thousand: A grass-roots, peer-led, education, advocacy and support organization for persons with HIV disease.  The majority of their constituency is persons with hemophilia who contracted HIV/AIDS from tainted blood products.

Patient Notification System: A free, confidential, 24-hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.

Medic Alert Foundation: The original medical ID company that provies 24/7 emergency services.

 

American Medical ID: Medical ID company partnering with LSBDF to give patients 10% off their purchase and gives 10% back to the Chapter. Get code here.

LA Kelley Communications (PEN Newsletter): Founded in 1990 with the belief that any individual facing hardship, adversity or challenges-when given the right tools-can overcome, triumph, and even grow stronger in character and confidence.

Patient Services, Inc.: A non-profit organization based in Virginia, that has been expanding its effort to help patients with chronic illnesses pay for rising drug costs.

FDA’s Blood Products Hotline: Provides information for patients, and supports programs specifically designed to help ensure that patients’ voices are reflected in the regulatory decision making process.

Foundation for Women and Girls With Blood Disorders: Provides a wealth of information for women and girls dealing with bleeding disorders. Diagnosis, treatment, and care information all at your fingertips.

 

Scholarships

There are a number of educational scholarships available for people with bleeding disorders and their children, parents, partners, spouses and siblings.  HANDI has compiled a list that you can view at the NHF website by clicking here.

News from HFA

  • Word from Washington: August 2023

    Advocates are responding to yet another payer-side, cost-saving scheme that harms patient access to medicine. The latest version, the so-called “alternative funding program” (AFP), is a shady strategy pitched to employers that promises to lower health plan spending on specialty drugs such as bleeding disorder products and other expensive medicines. AFP vendors advise employer health The post Word from Washington: August 2023 appeared first on Hemophilia Federation of America.

  • UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices

    UPDATE as of 8/28/2023 Takeda, in agreement with the U.S. Food and Drug Administration (FDA), has decided to voluntarily replace BAXJECT® II reconstitution devices produced by Baxter between October 2021 and January 2022 co-packaged for use in conjunction with RECOMBINATE™ [Antihemophilic Factor (Recombinant)] and RIXUBIS® [Coagulation [Factor IX (Recombinant)]. Takeda has received reports of white The post UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices appeared first on Hemophilia Federation of America.

  • Dear Addy: In-District Legislative Meetings

    Dear Addy, With Congress in recess, how can I continue to participate in legislative advocacy? Signed, Bleeding Disorders Advocate Dear Bleeding Disorders Advocate, Every August, the United States Congress embarks on a recess, temporarily adjourning its legislative business and allowing members to return to their home states and districts. The August recess tradition serves as The post Dear Addy: In-District Legislative Meetings appeared first on Hemophilia Federation of America.

  • Word from Washington: July 2023

    July saw mounting coverage losses from the national Medicaid unwinding. As of July 28, nearly four million people have been disenrolled from Medicaid since redeterminations began in April 2023. Three-quarters of that total lost coverage for procedural reasons, i.e., paperwork, and may still be eligible for Medicaid. In response to this dismaying track record:  Also The post Word from Washington: July 2023 appeared first on Hemophilia Federation of America.

  • Blog: Intern Introspective #7

    It feels incredibly surreal to think about the fact that this is my final week at HFA this summer, and that in less than a week I will no longer be exploring D.C. and will instead be back home in San Diego. The past ten weeks here in Washington, D.C. with HFA have been an The post Blog: Intern Introspective #7 appeared first on Hemophilia Federation of America.